Paul & I have been trying to get this house refinanced for 2 years and just the weirdest crap keeps coming up to delay it and this latest one is the appraisal came in crazy low. We even filed a rebuttal but appraisers are beholden to like, nobody so nothing much came of it. We could have still gone through with it & were waiting for rates to stabilize but after talking with our finance unicorn figured the only way to get the rate and payment we want would be to bring $12K to closing (because sure, who doesn't have $12K hanging around on a moment's notice?) due to the low appraisal. So she & I thought...that appraisal expires soon, let's get a different one. She was over the other day dropping off some paperwork and got to see the progress we were making on repainting the living room and saw the granite we're going to use for the new mantel and the new light fixture in the dining room and figured a $500 appraisal could save us tens of thousands and appraisals are happening much more quickly (it took MONTHS to schedule last time). With that in mind I spent the weekend finishing the living room paint and boy are my arms tired *rimshot*
Now I'm in this weird place that I get thanks to Rupus where I'm full of energy but I can't move. I liken it to having mono, when you started to feel a bit better and thought "I can totally get up and do all these things today, I feel good! I've got oomph!" and then you go to get up and physically can't. Body say "NO". I was just so psyched to get things accomplished that I want to keep going and we know I'm never good at limits. Drug #373593743876 is doing OK. I seem to have hit a wall like 3 drugs ago but I can mostly function and I'm so tired of new drugs and new side effects that I'm just staying put for a while. I just get frustrated because things take me so long. We've been in the house a little over 2 years and have removed the wallpaper in the kitchen and repainted, removed the wallpaper mural in the TV room and painted that wall (all the walls are actual wood paneling and I'm hesitant to paint over it. The feature wall looks nice but I hate painting good wood. Maybe I'll do a light white-wash), put tile on the master bath floor, changed the TV room light fixtures, changed the dining room light fixture, and now the living room focal wall and other walls. Those last 3 have been done since January when the last appraiser came. This would take normal people like less than 6 months. Fucking Rupus. My living room sure is pretty though.
Paul and I joined a gym again this past weekend. It was cheaper than I thought and their pool is nice and doesn't allow children so I was sold. We signed up yesterday after using our trial pass and Paul actually gives a damn about using the whole gym and improving health and such so the girl signed him up for the free personal trainer assessment. She asked me and I said "Nope. Crippled. Just here for the pool" but now some trainer is calling me and I know I'm going to have to either answer the phone or tell this person in person "Hi, I have Rupus. I'm not gonna get better. I eat just fine, I've seen nutritionists. But between my disability and all the drugs to treat said disability my body resists any kind of change like weight loss and in some cases actively fights it. Please don't try to talk me into some program that's just going to make me feel like a goddamn failure for not meeting your goals. My one and only goal is to get in the pool and try to be comfortable for a while. Weight loss is not my goal. Fitness is not my goal. Please leave me alone." Paul and I had a discussion about it at dinner after going in to get the tour/trial pass thing. I told him how hard it is to try and set any goal because I never know what I'll be capable of on any given day until I get up so any time I try to be like "I'm going to do X 3 times a week!" I feel like a pretty instant failure. He suggested just making the goal "when I get out of bed and I find I have the energy, I'm going to commit to swimming that day" which I think will work. And we touched on the whole personal trainer assumptions about my health that I knew were coming (thanks for proving me right, answering machine! LOL) and he's like "Hello, black guy here. I know all about people making assumptions on the basis of how you look. I'm perfectly suited to understand you right now" and of course he's right, it was just funny to hear him say. I made it through 5 laps with my little kickboard yesterday and I'm not dead today so I'm cautiously optimistic...
Now I'm falling back apart. This past Friday my dad came down to have lunch and I had to use my cane. I had to use it to get around the house, much less leave the house and that hasn't happened in a while. And I hated that it had to happen on a day when I saw Dad because I know it scares him. I've been that fun flavor of nauseous where you are hungry but the thought of eating makes you nauseous but so does the thought of *not* eating. I'm seeing a lot of things that aren't there. I hesitate to consider it hallucinating because it's not like computer animated babies are dancing in my living room but it's still becoming frequent enough to be bothersome. It's almost exclusively peripheral vision type stuff where I think I see one of the cats but realize it's a grocery bag, I see people on the side of the road that aren't there- that kind of thing. I need to get my shit together, I need this to not be another symptom. It's hard not to resent the sh*t out of your body and I'm not sure how to stop.
Some history: I have not seen or spoken to my mom's father since I was two years old. Neither has she. He cheated on my grandmother and left her for another woman and wasn't discrete about it. She had no way to support herself and Uncle Jim was young enough that he still lived with her. This is how I acquired Grandma & Crappa- they were mom's parent's best friends until Jack split and they stayed loyal to Grandma. After she died, they took over as my grandparents. Mom helped her fight to get alimony and half of his State Patrol pension. After she died, mom sued him. She would have inherited that money eventually but since Grandma died so soon afterward there weren't really any plans or a will in place. So she sued him, it was a precedent-setting case that's still in law books. So naturally, there's a rift there. She had my dad and grandma & crappa, etc. but Uncle Jim didn't have any other family so he went to live with his dad and they had a pretty normal relationship. But even if Uncle Jim brings us up, Jack's never asked about us. I ask about Jack every so often because I know he's having health issues and I want Uncle Jim to have family he can talk to about it.
Back to the present: Uncle Jim is showing Jack new artwork on his tablet and shows him the facebook page I made him and all the people who have liked and commented and Jack asks "are there any pictures of your niece on there?" Who knows where that came from and I can't begin to read into that but of all the things to catch you off guard...
i switched drugs *again*. I've gone from Rituxan infusions to Xeljanz pills and from Imuran to Arava. So far so good aside from the nausea and upper respiratory bullcrap.
Today (well, yesterday at this point. The 14th) marks 16 years since I left Stump. My least favorite day of the year and lucky for me it coincided with my hormones going cuckoo. Plus I've got a major Lupus rash signalling a big flare, which is no surprise considering the stress surrounding this time of year. So I feel like crap mentally and physically so I'm a real joy to be around, I'm sure.
I did roast a chicken for the first time though so I'm officially an adult. It was f*cking tasty too. So all is not lost. This yearly slog is nearly complete and I'm even sort of looking forward to my Christmas nachos in my jammies watching 24 hours of "A Christmas Story"
Two different people cut in front of me at the deli today, one old dude very obviously. Like he was trying to gague if I would raise a stink. And normally I would have said "excuse me, I was here before you" but I've had a weird headache for like 10 days and my Lupus has decided it would be an awesome time to flare up so I didn't want to open my mouth because I knew what would come out was "what, you think you can cut me off because you're older than me? Because you're a MAN? WELL I'M A CRIPPLE GODDAMNIT AND I NEED THAT CHICKEN AND FOR YOU NOT TO BE A DICK. FEEL BETTER NOW? FEEL GOOOOOOOD ABOUT CUTTING IN FRONT OF A POOR DISABLED WOMAN???" So I bit my tongue and concentrated on the chocolate pudding in my cart.
My hips and especially my lower back have been killing me to the point that I grimace when I straighten up and resist doing anything requiring bending or...or moving in general really. And my depression is popping back up in really weird ways and it's all getting difficult to handle. Dad gave us the leather furniture from his family room and it's crazy comfortable. They bought it at a yard sale and the guy was very tall so he had it custom made to be deeper to accomodate his legs. And he never used it. It got delivered and he decided to sell his house. James and I have been fighting over it for years but Dad & Kate are getting their house ready to sell (which is seriously weird. They've been there almost 25 years) and James hadn't found a place to move yet so we got them. Muahahahaha. And they are so comfortable it would almost make you weep and it's the only place I'm comfortable sitting and I don't know if it's because I'm flaring and it's a good place to sit or if it's such a good place to sit that my body is like "f*ck everything else, give me the couch and I'll shut up"
Now we're planning on going to England to meet Alice in November so of course I'm worrying about money and planning and all of that crap. But I reserved a taxi tour in Manchester to see all things Smiths related so I'm trying to focus on that. And pudding.
But back to this weekend. Paul said "You should be a counselor, you're good at it" and I told him "I AM a counselor..." "Well you should do it like for a job though!" And I reminded him we talked about it last time I pulled a friend off the ledge (so to speak) and both he and Alice said "You would be great at that, but don't!" because I will lose someone and I doubt I can handle that. If I wanted to do a private practice-type thing though, you cannot bill insurance unless you have a Master's degree and there's no way in Hell I'm going back to school for my MSW. Maybe it was just the BSW program I was in, but that kind of tedium is not my jam. I had my counselor's license when I worked at CSTC though, but I'm pretty sure I had to state where I worked on the application so I'm not sure I can get one for private practice. It's all a moot point for the moment though, I'm still way too shaken up to consider anything. For crying out loud, if you're having these feelings how about you come to me before they get so bad? Ugh, my brain hurts. My heart hurts.
This past weekend by infusion drug waved bye-bye. I was feeling a little odd; feverish, general malaise, etc. I thought maybe it could be chalked up to the whole brain med fiasco but then it was like...I felt the drain plug get pulled out and the goodness get pulled out. Not even metaphorically, I could literally feel it all draining out of me. Then I glanced at the calendar- of course it's about 4-5 weeks before my next chemo visit.
I wish I could take my body/self by the shoulders and go "settle down, damnit!"
Because right now my mental health is precariously balanced on the head of a pin and swaying dangerously. Thankfully I filled my prescriptions early last time so I still had some of the good pills left and have been mixing them with the sugar pills they stuck me with. Plus I knew these pills did nothing so I have that knowledge in the back of my head when things feel like they are getting out of control to try and ground myself. Stuff always sneaks through though and it can't be stopped. The other night I was crying because I couldn't feed all the raccoons. Like *ALL* the raccoons everywhere ever. But Paul knows and Alice knows so if thngs get wierd they can step in. May was a rough month for me for various reasons and I finally felt like things were settling back down. Guh. I didn't realize my balance was so delicate.
Rupus and pleurisy have kept me away from yoga for a while & that hurts my heart. I'm trying to remind myself that it's going to take me longer to recover from the mess that was our home-buying process & that beating myself up about it will only make things worse both mentally and physically. I miss class though and I really miss Pamela. She's so encouraging and understands my crap so well. I'm wondering if part of my lack of motivation is that the last time I made it to class (for the first time since we moved) there was a substitute teacher and now I'm a little gun shy to go and have it not be the class I'm expecting again. It was a weird hit to the routine-center in my brain.
Tuesday I'm going to get a pedicure with Tami, our mortgage unicorn. It's nice to have someone nearby. It can get lonely when it comes to little things like that since so many people are up in Seattle or further away. Alice comes by every Wednesday but it's not as though she lives down the block and I don't want to be this company-hungry friend asking her to come this far out of her way all the time after working. Saturday we're getting together with John & Alan for our first strategy session for the smiths/Morrissey show we're putting on, probably in August to time things with my drugs. So I'm getting some stuff on the horizon and that's nice since my horizon has been pretty empty for a while.
Headed back for my recheck the next day and thank the good lord it wasn't the same staff. The new PA asked about all the meds I take and what made me decide to come in the day before and what the previous PA did/said and he's like "that weird, that pain isn't near your kidneys. Why was he so insistent?" Good question, dude. "So...did you poop?" Oh yeah, I was hollow inside at this point. "And the pain didn't change?" Nope. He said he'd rerun my labs and wanted to do a CT of my chest to rule out a PE but that he thought I likely had something called pleurisy at which I threw my hands up in triumph and Paul said "that's what she's been saying it is the whole time" We sat there way too long, but it turned out it was good that we did because you have to wait 24 hours between cat scans that use contrast dye and when the CT guy came to get me it had *just* been 24 hours. Scan was clear, no PE (which is something Mom, Beth, & I were glad to have ruled out) and I got to go home with a diagnosis of (surprise!) pleurisy.
Now I'm back to my routine of ice packs and anti-inflammatories until I can get back in with Dr. Gorman but I'll call her nurse tomorrow and will likely have to do a course of steroids to try and get this under control.
Fun times, y'all. FUN. TIMES.
We're mostly settled here and are hitting that "oh shoot, we need X" phase that tends to cost more than you think. Of course, I am a cheap bastard. There's the "Hey, we give a damn about this house and want to make it awesome. Let's hang up all of our artwork!" part. That part requires a bunch of frames for previously un-framed stuff and of COURSE nothing we have can be a normal size that you can buy at Target or whatever so I had to buy them on Amazon and $$$. Then there's the "these blinds aren't enough for our day-sleeping vampire eyes and hanging up our old curtains by clamping them to the valence rod makes us look like hillbillies" part. So I scour the intertubes and find nice ones at Target and $$$. New bookcase and $$$. Building pantry staples back up and $$$. Replacing exterior door hardware and then replacing a door because the doorknob was set really far in on the other door but we're keying everything to work on the same key so we need to replace that whole door and $$$. Our tax refund was pretty hefty though since the house closed before the end of the year and we got to deduct ALL that shiz, so it's not like we can't afford it but I'm bad at spending large-ish sums of money.
Since we moved I got a hold of Robbie to see what he wanted out of the gear he had left in the basement and to make him come carry stuff. But now I just miss being in a band again. Part of it is wanting to be back on a stage. We've been so wrapped up in the house stuff for the last many months that I'm feeling really isolated and want people to clap for me. The biggest part though I think is just wanting that band camaraderie back. I miss the jokes and practice and post-practice hang-outs. I'm toying with the idea of getting a couple friends together and doing like a Smiths/Morrissey or college radio cover night just to get it out of my system.
Part of me is upset that I can't be more accomodating but...wacky immune system etc. The other part of me though is screaming that I cannot be his social worker nor his therapist but he's in such a bad way that it's hard to bite my tongue. It's sometimes a hard line to walk between "I'm chatting with a good friend and they need advice/reassurance" and "give me the reins, you're cocking this up and I'm going to give you step-by-step instructions on how to fix it." This time though, I can see the edge of the abyss and I know I need to stay the Hell away. We're helping in the best way we are able and I'm glad, but I need it out from under my nose because social work is my job and your job doesn't belong at home.
On top of all of it, he's gone very conspiracy theory/uber-hippy pothead who is trashing vaccines and pretty much all of Western medicine. And I can respect that, I've seen Naturopaths and Acupuncturists and am open to all of that but so far all that has kept me functioning is hard-core, chemical-laden chemo. So having someone come into my house and trash the means I use to stay alive...sucks. (he wasn't attacking me or my treatment, just speaking in general but you don't eat your BLT's in someone else's Kosher household)